Proof that intense exercise works in stopping Parkinson's symptoms

Okay. Pay attention. This is important.

I have been working with a new physical therapist for two weeks. She is the best PT I have ever worked with. (That would be seven PT's total.) She is expert in treating people with Parkinson's; has taught me much in just two weeks and has provided me with a whole bunch of new weapons in my fight against Parkinson's.

This is the important part. She told me that I work harder at keeping physically fit to fight  PD than any of her other patients. Then she said that I was her most mobile, agile, and almost physically normal patient.

There you have it. Confirmed by an expert Parkinson's physical therapist. My exercise program works. And not only does it work, but it is so effective that her patients that are younger and who have had PD for many fewer years than me, cannot compare with my ability to keep PD from affecting me the way it would otherwise because of my relentless battle.

I exercise more than anyone else working with my therapist and I have the mildest and fewest symptoms. That is not a coincidence. I made that happen. If you have PD and you do not exercise extremely hard, you should talk to  your doctor about an intense exercise program. If he or she is not willing to help you give this priority, find a new doctor. Then thank me.

I'm waiting.

I did a photo shoot at the World Trade Center last week. This is one shot.
I can still take professional quality photographs because my Parkinson's is hardly affecting me because my exercise program works. Please visit my photography website NYUrbanimages.com

Also last week, my photographs were exhibited at One Art Space in Tribeca, for my second New York City show. I'm now working on my third. Stay tuned.

I intend to beat back Parkinson's sympton's if it kills me.

To keep my promise to let you know what I am doing, here is the latest. There is a lot going on in my dispute with Parkinson’s. I intend to beat that little bastard of a  disease if it kills me; so even when I  am exhausted, I keep pushing  so that I can feel l will never give in to PD. Never.

I saw my new neurologist just 2 weeks ago and we hit the ground running. I have a consultation with a deep brain stimulation specialist tomorrow afternoon. I am in a photo exhibit with 14 other photographers in 2 days. I need to get 3 photos from the lab in Midtown to the gallery in Tribeca. One of the photos is 5 feet wide. Right now, I am waiting for the lab to call. Oh…and I am writing this blog. And I am entering 2 calls for art from a lower eastside gallery looking for exhibit stuff to show and sell. That is enough change for a couple of weeks.

Not going to happen; instead, yesterday I met my new physical therapist. She called the night before and from her voice I was expecting a 50 ish woman with a rigid approach. There is nothing wrong with that. I like experienced people. Then who shows up is a 33 year old intelligent, charming, pleasant yet mature young lady who sings along with the music I play in my gym despite the fact that she could be my granddaughter (almost). Makes me feel young (almost). To top it off, she is experienced with treating both Parkinson’s AND neck, back and shoulder problems. She is now part of my team. Beating Parkinson's takes a team. Remember that. Based on what I have learned from her already, I believe every Parkinson's patient must have a physical therapist on her/his team.

She told me that I was not normal (but I knew that). She said normal for someone with PD is to not exercise and that it was hard to get PD patients to exercise, even when they know how important and effective it is. When I told her about my fitness program to combat PD, I could tell that she was amused.  

She critiqued my exercise routine and to my surprise found numerous deficiencies and problems, some of which could be contributing to my pain in the neck. I can’t wait to get rid of this pain. I would rather be pain in the neck than have one. My wife could argue that with half of that statement, I am already successful.

I will be seeing my therapist twice a week. When we establish a new program to keep me fit and loose the pain, we will explore boxing and tai chi as added therapy.

Please join me at the reception for my group photography exhibit Thursday (this week) Sept. 20 6 - 9 PM at One Art Space, 23 Warren Street, at Church Street, a few blocks North of the World Trade Center.

                                                                                                                                          

Just say "Thank you for your time Doctor." Then leave and don't go back.

I just went through the aggravation of changing doctors in mid-course, otherwise known as changing horses in midstream. Since Parkinson’s is a progressive disease that attempts to attack you from different directions simultaneously, what works for treating symptoms is constantly being challenged. Or what works today may not work tomorrow. Fortunately, there is progress being made, slowly but surely, through the Parkinson’s Foundation www.parkinson.org

Are you absolutely positive that your doctor is the best Parkinson’s doctor in your neck of the woods? Shouldn’t you be? Settling for second best is not a good plan if you have PD. I am now on Doctor number 5, and I can comfortably say that each move improves my ability to live a normal life (if there is any such thing).The Parkinson’s Foundation has an excellent tool for anyone looking for expert advice and resources to deal with PD.

So when I went shopping for a new doc, this tool made the process a lot easier than I expected. I used their website www.parkinson.org and found it easy to use with a list of “centers of excellence” around the country and where I found information on the doctors I now rely on to keep me ahead of my battle with Parkinson’s. Unless you treat PD as a continuous battle, you will lose the war. With Parkinson’s you can’t let your guard down and you can never give in. Never.

These are the steps I followed to change doctors.

1.     As much as I liked my doctor, deep down I knew I could do better. First step was recognizing the shortcomings of my guy. These were what I perceived as deficiencies. He was practicing all alone. There were no other resources in the practice. As a result, he always seemed pressed for time. This led me to think he didn’t keep up with all the treatments available. (I was right.) I had the sense that he felt that drugs were all that was needed to treat me. I knew from my 14 years of PD that exercise was very effective in eliminating most of my symptoms, yet he never discussed this with me. How could this happen? So for me, it wasn’t hard to see I should be getting more medical assistance than mere drugs.

2.     So with a little internet savvy, I came across the website www.parkinson.org which is mentioned above and is a treasure trove of resources and information that everyone affected directly or indirectly by Parkinson’s should explore. On this site I found reference to “centers of excellence” as the latest and best resource model available. These neurological medical practices approach PD with multifaceted resources.

3.     I then found those centers located in New York City and then visited each website and decided on the one that seemed to fit my needs best. I checked the credentials and expertise of each doctor and found one taking my insurance and new patients.

I called and made an appointment.

There in a  nutshell is all it took to get setup for the best medical treatment now available for my Parkinson’s. It was not a lot of work. In fact, if you are being treated by a general neurologist who is not a specialist in Parkinson’s, or (I know this sounds inconceivable) by a GP (General Practitioner), then you need to deal with reality. You are not being very smart. If that isn’t blunt enough, then try this. Stop the nonsense.

For me the next steps are to look at all the additional treatments I now have available and decide on adding those my new doctors recommend.

I will keep you up to date. Complicating this is the fact that there is no standard treatment that fits all, EXCEPT FOR EXERCISE. That is a universal and successful treatment for all symptoms.

If you do just one thing to help you fight the progression of PD, then choose exercise. In fact, that is a great screening question for finding a new doc. If the new doc doesn’t think exercise is at or near the top of the list, say “Doc, thank you for your time.”

 Then leave and don’t go back.

PS. I have been invited to exhibit some of my photography with 14 other photographers September 20 to 24 at One Art Space, 23 Warren Street, New York City. You are invited to come to the opening ceremony (which means drinks, music and good conversation with the photographers) at 6-9 PM this Thursday. Have a peak at one of my photos to be shown.  

IMPORTANT MESSAGE TO NEUROLOGISTS NOT TRAINED AS PARKINSON'S SPECIALISTS

Okay. So I tend to the dramatic and occasionally use a little hyperbole. No, I am not likely to start a lawsuit over some of my prior doctors failing to advise me on the importance of exercise as a Parkinson’s Disease treatment. (Although I do reserve the right to change my mind. Just piss me off and find out.)  I’d rather use my energy to focus on containment of my PD. As I get older, and PD continues to chase me, I need all the energy I can muster.

I just received a package of info  from the Michael J. Fox Foundation for Parkinson’s Research  (MJF). MJF is good at providing encouraging news on advancements in research on curing PD. Coincidentally, MJF recommends that Parkinson’s patients see doctors specially trained in movement disorders like PD and, in conjunction with the Edmond J. Safra Fellowship in Movement Disorders, provides financial support to medical schools to help build a network of more qualified Parkinson’s doctors and other specialists.

There are so many advances in the treatment options available or soon to be available, too many to list here. If a neurologist is not a specialist in Parkinson’s disease, he or she is not going to be up to date with he latest available options for  treatment of PD. Just to mention one: Deep Brain Stimulation. This has been around since 1997, but In 2016, the FDA approved a Deep Brain Stimulation for patients with lighter, less than severe symptoms. And today there are three devices on the market from just one available just recently. This may be the most promising development in controlling symptoms in the immediate future. That would be like tomorrow. Why wait? I have a session scheduled with a DBS specialist at my new doctor group to see if I qualify for this treatment. My last doc never even mentioned that as an explorable option. If left to him, I might have never even been presented with this opportunity.

Which brings me to today’s message to doctors who are not specialists in Parkinson’s disease. Please. DO NOT ATTEMPT TO TREAT PARKINSON’S PATIENTS. You are not contributing to a solution and you may be doing your Parkinson’s patients a disservice, plus you may  even be acting in an unethical manner. Please get out of the way. All you have to do is find the nearest center of excellence in the treatment of Parkinson’s and refer your PD patients there. Better yet, follow up with this Foundation and see if you can become a PD specialist.. If you do not know where to look, contact The Parkinson’s Foundation. (1- 800-473-4636 or helpline@parkinson.org  ) I'm sure they will be happy to help.

Meanwhile, I am happy to show you a photo I shot in Manhattan for my photography business. Hope you like it.

Manhattan

This could end up in a lawsuit

I was right.

Everything I have been saying and writing about how exercise is the best defense against the advance and even the existence of Parkinson’s, including my seemingly overstated claims are now verified and documented by the Parkinson’s Foundation’s research. Here is a sampling:

1.     Exercise improves cognitive power and performance. That’s right. It helps you think clearly.

2.      Exercise forces the brain to create new neurotransmitters thereby countering PD and it’s annoying symptoms.

3.     Exercise makes dopamine work better.

4.     Exercise slows the progression of PD.

5.     Exercise improves concentration.

6.     Exercise improves memory.

7.     Exercise reduces depression and anxiety and

that’s not all. The Parkinson’s Foundation compares exercise to mandatory medicine that should be part of absolutely all  people’s PD fighting tools regardless of age.

It now baffles me more than ever that many GP’s and general neurologists continue to try to treat their PD patients without the expertise or training to handle this disease in it’s many manifestations. The result is that thousands of PD afflicted people are not being properly advised to exercise aggressively in order to minimize symptoms and slow the progression of PD. Isn’t there a rule or ethical code that requires doctors to send their patients to the more qualified specialists?

For me, this is the source of my outrage: The first four PD doctors of my 14 years of Parkinson’s never suggested exercise as a way to beat PD. I figured this out for myself. Why is that? How is that possible? I now have a book (or brochure) published by the Parkinson’s Foundation, Fitness Counts. If I were to write a book about my experience with PD AND I was infinitely smarter, more educated and trained, I would have written this book. I am, at least, gratified that this book exists. Everything that I have learned by trial and error is in this book. In addition, it goes well beyond what I could have known or figured out myself. Not once did any of my 4 prior doctors supposedly treating me for Parkinson’s ever mention anything about the topics covered so well in this book. The thought crosses my mind that I was denied a potentially better life by the neglect of my prior doctors who didn’t  care enough about my well being to get me this readily available information.

I note that they never missed collecting a copayment . Greedy fuckers.

I need to think some more about this.

Photos are of me working out and figuring out on my own that exercise is critical to fighting Parkinson's. After 14 years under the care of 4 neurologists, I found a publication  of the Parkinson's Foundation that describes everything I could have been doing to improve my physical condition had any of my doctors taken the proper course of my treatment and referred me to more qualified specialists who would have given me this free book or managed my exercise program.

New doctors and I woild rather be liucky than smart

Just got back from my visit with the largest Parkinson’s group medical practice in the country. Turns out to have been a good idea. Of course, only I knew the docs were auditioning to win me as a patient… I didn’t want them to know I might be writing about them later in the day. Given my generally skeptical attitude, and my lack of patience and respect even when it is due, I wouldn’t want me as a patient. (Notice my clever use of patient and patience in the same sentence? Just pointing that out.)

Also turns out that the people I met from this group are the nicest, most professional, most concerned and helpful people I have ever met in a medical environment. Let me fill you in.

While I found the doctor with whom I met on the internet, I got lucky. (I would rather be lucky than smart.) She is a very senior member of the group and an expert in a drug I take and which is a powerful agent with sometimes problematic side effects. She said this drug was like heroin for PD patients and wants to take me off it. I am fine with trying that. She wants to explore a treatment called deep brain stimulation as a better therapy to control symptoms. 

She was successful in convincing me to be a guinea pig for three studies sponsored by Yale University, UPenn and Columbia University in searching for common denominators of the causes of Parkinson’s. I’m happy to contribute blood samples, brain tests and whatever else I can. You never know who may benefit in the next generation. It just may be my grandchildren. You’re welcome.

A program coordinator gave me a brain test to determine if I had any diminishment of my brain functions which can affect some PD people. The test was challenging and when I took it, I thought I did only so so. I was happy to find out I got a prefect score. (I told you, I’d rather be lucky than smart.)

Conclusion: Finding resources beyond my single practitioner was the right decision. My new doctor got me to thinking about how I want to live the rest of my life. She caused me to want to plan for a long and productive life given the fact that both my parents live or lived beyond 90. Mom is 96 and going strong.

Who knows, if I live long enough, maybe a cure will be found in my lifetime. Then I will have to find something else to complain and blog about.

The photo below is the reflection of One World Trade Center on the 9-11 Museum. More photos at NYUrbanimages.com my photo website.

9-11 Museum

Is the glass half full, half empty or just twice as large as it needs to be?

Obviously, I am not alone with my positive results with beating back PD symptoms through exercise. Someone at the Michael J. Fox  Foundation (MJF), was kind enough to send me  information  they recently published on what they have found related to exercise and Parkinson’s symptoms. Because my blog is personal, I decided to compare my experience with that of the MJF article. I see similarity and differences too. My expectations have been different and more demanding than the MJF program,.

First of all, I started my exercise program because I saw my muscles shrinking and my strength going away and it scared the shit out of me. I had been in very good physical condition my whole life, even running a 26.2 mile marathon, and suddenly I was a shriveled weakling. I attacked my muscles with a program of mostly light weight-lifting and got immediate results. As the disease keeps trying to advance, I have responded with more intense exercise. The surprise with my initial program was that most of my  symptoms including a dead leg, inability to do detailed hand manipulation, a lack of arm swinging while walking, some clumsiness while moving, etc., either improved or went away. This made perfect sense to me because a strong muscle should be able to work better than a weak muscle.  I still don’t understand why more study of this phenomenon has not been done.

The MJF studies referenced are sort of “if you do this, you will feel better. So why not exercise.” Maybe it’s the engineer in me that wants a better response, even an answer to why exercise works to halt the progression of PD. Some thoughts and questions logically need answers. This point begs answers. Remind me to get back to this point later. It’s just the way engineers approach life.

There are a couple of critically important take-aways from the MJF studies,. (Please memorize these points and think about them daily. You may even want to thank me some day for pointing these out.)

1.       People who exercise regularly are less likely to contract Parkinson’s Disease. (No, that is not a misprint. It is real.)

2.       People who exercise regularly but do contract PD anyway, are likely to have the severity of PD lessened as a result of exercise.

In my next post, I will compare my program to that recommended by MJF. They are significantly different.

I am reminded of the story of the engineer, the optimist and the pessimist. The optimist sees the glass as half-full. The pessimist sees it as half empty. The engineer sees the glass as twice as big as it needs to be. 

Photo was taken last night in Bryant Park during a play.